We were away from home, our community, the blogosphere and the online world in general for the last few weeks. People take a vacation from their normal routine and work and it seems to rejuvenate and re-energize and re-something them and they return shiny and happy. We enjoyed our vacation as much as a family with autism can.
K screamed, perseverated and dysregulated as usual but I think despite all of that he managed some genuine enjoyment. It is hard to tell when he is really enjoying himself.
There has never been any doubt about his motivation to be around other people. What we worry about is constant failure to understand and function in social settings wearing down this motivation and his resilience to persevere in life despite his handicap. We were around many different children and I saw some real increase in motivation as well as resilience in K.
He did not understand, talk, play or interact with them in any typical manner, but managed to make his presence felt, make his needs understood, and manipulate his environment so that the other children became involved in the very limited number of activities that he feels competent in.
The children over compensated, loved, accepted and spoiled him. This will never happen in a day care or school setting, where fairness and selfishness is encouraged. No one teaches children to compromise in those settings.
I think that even though over compensation may have made Khaled’s life easier, and reduced the social challenges, it still does not limit his capacity to learn and grow. Even if his cousin sits and spins a coin on the floor for him repeatedly to make him happy, K learned that spinning the lid of a tin on his own is nothing compared to sharing the experience of a spinning coin with someone else. Even if the kids play the same running game (run in the hall from the door to window screaming), they add their own little variations every time and something changes. But the reward of running with someone else is enough to overcome the anxiety related to little variations.
Although K got used to being entertained, he went through more transitions in the space of a week than he does in a month which adds to his over all ability to self regulate. Living with the same children gave K enough time to practice regulating and coming back to welcoming smiling faces, eager to give him lots of attention.
Being an only child interacting mostly with his parents and therapists, love and attention from other people is a new experience for my son.
I allowed myself to imagine a life where all my family members lived within driving distance and could be a regular part of each other’s lives. I wonder sometimes what the real tragedy of our life is, disability or immigration?
So even though no day was tantrum free, I woke up every day exhausted, being around other NT kids made sure my son’s disability was spotlighted before my eyes every waking second, despite all this we felt loved, welcomed and spoilt rotten. I can’t wait to do it all again if I get the chance.